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patty22
08-23-2011, 10:26 AM
I just got back the surgeon's recommendations for my surgery and was wondering what you all think or what other questions should I ask him about his recommendation? Is there any difference between posterior and anterior approach when it comes to outcomes or recovery time?

He stated that I have AO type 2 scoliosis and recommended surgery for correction, stabilization and long-term management of the curve. He recommended a posterior spine stabilization surgery multilevels probably from T6 to L1 but wanted to take some bending films first before he makes his final call. Segmental pedicle screw instrumentation and also rods. He said the other alternative would be an anterior approach multilevel and try to do a shorter construct and stabilization but again, depending on the bending films.

All my motor functions and reflexes are strong/intact.

He measured some films from 2004 and my curve was stated to be 34* from T9 to L1 but he measured it as 39*. My curve now is 54* T6 to L2.

I also heard that the less of your lumbar that is fused the better (as far as flexibility goes). I sounds like my area of fusion is not as extensive as some others that I've read on this forum.

Anyways, any insight would be appreciated!! Thanks!

jeneemohler
08-23-2011, 09:51 PM
I am no doctor, I don't have all your history, and every scoliosis patient is different-but I'm going to give you some food for thought... What are the reasons for doing surgery now? You are still young. Is your curve progressing? Are you in pain, and is it affecting your quality of life? I'm just playing the devil's advocate. The measurements of the curves vary from doc to doc, and can vary from visit to visit. Would he consider monitoring it every 6 months to get more readings and a better idea of what is going on, progression wise? A couple degrees a year is sometimes considered "normal", if there is such a thing! Then you would have a more realistic number to work with.
Have you considered getting another opinion? If surgery is called for, I would definitely get another one. Even if you like your doc, it helps to have someone else agree. Then you know you are on the right path. This is your body, and your life. It is a huge decision you are facing, affecting the rest of your life. It doesn't have to be done immediately, so gather as much information as you possibly can. This forum is the best place to get information and support. Research!!! We are all here to help.
I put surgery off for over 30 years. I was very active and strong, and wanted to put it off as long as possible. There was no reason to do it earlier if I wasn't in pain or the curves were progressing. Two different doctors wanted to fuse me at age 18. I finally found a doc I trusted and that believed surgery was a last option after all other methods were exhausted and quality of life suffered. I was monitored for years, and I finally just had surgery in January at age 49. I had rapid curve progression (shrank 3" in 6 months) and pain that was not controlled by other methods any more. It was time, and I was at peace with it. I knew we had done all we could do and surgery was now necessary.
Good luck in your journey. It is a tough call. You want to do surgery while you are young and healthy-yet don't want to risk a less than favorable outcome at a young age. Yet you don't want to wait until you are too old to heal and be able to handle the recovery. I struggled for years with this. But I did great, even at my age. Keep asking those questions!

Pooka1
08-23-2011, 10:04 PM
Is your curve progressing?

Her curve has progressed.

2004 - 39*
2011 - 54*

The minimum progression rate would be based on the assumption that the curve progressed at the same rate at every point during those 7 years and is (54* - 39*) / 7 years = ~2* per year which is the expectation.

The maximum rate could be very high if most or all of the progression occurred in only the last year or few years of those 7 years or less as in the case of collapsing spines as discussed by Dr. Hey in at least two case studies. For example, if all the progression occurred in the last year then the rate is 15* per year. That would not be expected as far as I know.

In either case, there has been documented progression in her case.

ETA: Both angles were measured by the same surgeon. The intra-operator precision is commonly stated to be +/- 3* so these numbers are outside of the noise. That is, even assuming the maximum error where the 39* is really 42* and the 54* is really 51*, that is still a difference of 9* which is real. (Also, given that precision, the actual progression could be up to ~21* by the way.)

Pooka1
08-23-2011, 10:10 PM
He measured some films from 2004 and my curve was stated to be 34* from T9 to L1 but he measured it as 39*. My curve now is 54* T6 to L2.


If I was faced with this situation with my daughters, my question would be about how the curve appears to be involving more of the lumbar over time and if surgery sooner rather than later would prevent the need for fusion into the lumbar. That said, the fact that you haven't listed the compensatory lumbar curve angle suggests to me that your curve is well confined to the thorax so that's good. At no point did our surgeon ever tell me the angle on the compensatory lumbar curves for my daughters. He only told me the structural curve angles.

Good luck.

titaniumed
08-23-2011, 10:50 PM
Patty,
Anterior’s can be quite invasive and need careful thought....

I actually should start a new thread and talk about corpectomy. It’s a process where they remove bone. It’s a very painful surgery. I have been reviewing my hospital reports and I had “partial corpectomies” from L1-Sacrum from the front. The disc disease that I had progressed and what happens is they have to remove about half of the vertebrae from the endplates. The bone ends up compromised, diseased, and they need good blood flow for fusion to take place. They then used extra thick “Peek” spacers to fill the gaps after discectomy. I have a lot of plastic in my back, 13mm x 5 levels=2.55 inches total. Peek is radiolucent. You cannot see it on x-rays.

I waited as long as I could stand the pain, and after Sharon’s thread with Dr Hey, my thoughts now are leaning in the same direction. In other words, don’t wait too long.....I don’t know if they can tell how severe your disc disease is from diagnostics. The scary thing is losing bone and the thinning of vertrebral height.

These are reasons to see a qualified scoliosis surgeon from the start. I did in the 70’s, but had a 34 year gap waiting. Please remember that I was 49 when I had my surgeries.

A posterior only would be an easier surgery and thus an easier recovery.
I have to say that given the circumstances, I came out great.

Ed

Pooka1
08-24-2011, 07:40 AM
(snip)
I actually should start a new thread and talk about corpectomy. It’s a process where they remove bone. It’s a very painful surgery. I have been reviewing my hospital reports and I had “partial corpectomies” from L1-Sacrum from the front. The disc disease that I had progressed and what happens is they have to remove about half of the vertebrae from the endplates. The bone ends up compromised, diseased, and they need good blood flow for fusion to take place. They then used extra thick “Peek” spacers to fill the gaps after discectomy. I have a lot of plastic in my back, 13mm x 5 levels=2.55 inches total. Peek is radiolucent. You cannot see it on x-rays.

This is a great point. Progression is one thing. Ancillary damage to the vertebra and discs from simply having a moderate or large curve over the years is another. To read the testimonials, it seems that even in curves that don't progress, the curves that just hang there for years sometimes suddenly start progressing. In some cases, this is so spectacular that surgeons refer to it as a collapse apparently. The question is what triggers that? Maybe it's the damage that is being done due to the uneven loading over time even in the absence of progression. The testimonials along the lines of folks being fine for years and then all hell breaks loose fit this scenario.

There are also testimonials about natural fusion of compensatory curves in the lumbar over time associated with untreated thoracic curves. In essence, the back is "recruiting" the lumbar in the disease progression when an earlier thoracic fusion would have saved the lumbar from damage. It's ironic because folks avoid the thoracic surgery where it would be hard to notice any loss of flexibility and end up with obvious loss of flexibility in the lumbar due to natural fusion of a compensatory curve there. Dr. Hey refers to catching thoracic curves earlier to avoid involvement of other areas of the spine as "a stitch in time saves nine" and it's easy to understand why.

So you may want to ask the surgeon not only about avoiding lumbar involvement but this issue of ancillary damage even without progression. The decision is far more complex than it at first seems.

Good luck.

Pooka1
08-24-2011, 08:30 AM
This woman only had a structural thoracic curve and a compensatory lumbar curve but because the thoracic curve went untreated, her previously compensatory lumbar curve not only became structural but collapsed. This issue seems to be a huge reason to fuse thoracic curves, even sub-surgical ones in my opinion. Progression of the structural thoracic curve would be a secondary concern compared to potential involvement of the lumbar to my mind but that's just me. The thoracic fusions my daughters had drove the lumbars much straighter and hopefully that will avoid future damage. Anyway that is the observation even with the older generation hardware and that is probably why the surgeon tells me the thoracic fusion was "one-stop shopping" with no future back surgery anticipated.

http://drlloydhey.blogspot.com/2011/08/14-young-lady-with-adolescent.html


Also saw a 56 yo woman referred to me by Dr. Dan Albright from Raleigh Orthopaedics with a very painful scoliosis. This patient obviously had a adolescent idiopathic scoliosis, with right thoracic curve which was never treated. 40 years have gone by, and her thoracic curve has progressed a bit. But the BIG problem is that the lumbar compensatory curve below that curve has gradually degenerated and collapsed, causing increasing debilitating pain which has unfortunately limited her ability to work! I added a green arrow to the picture to show the downward and to the right collapsing direction for her spine. This is why I get so excited about the importance of early detection and early intervention for scoliosis --- it can help prevent big time problems later in life where the “fix” is a much bigger surgery at a time in life where the curve is bigger and stiffer, you don’t heal as quickly and well, and there is more chance for complications. Also, we all know that life gets more complex as we get older, as people depend on us more, rather than being able to lean on our parents and others.

He also makes some very interesting comments on other topics in that blog entry.

jrnyc
08-24-2011, 09:04 AM
i think getting another opinion...or 2...would be a good idea....
also..have you considered seeking out a surgeon who offers minimally invasive approach?
the surgeon could decide if that approach would be right for you...(except for Dr Aannd,
who says it is right for everybody)...
but in order to consider it, you must go to a surgeon who is using minimally invasive....

best of luck...
jess

patty22
08-24-2011, 11:11 AM
i think getting another opinion...or 2...would be a good idea....
also..have you considered seeking out a surgeon who offers minimally invasive approach?
the surgeon could decide if that approach would be right for you...(except for Dr Aannd,
who says it is right for everybody)...
but in order to consider it, you must go to a surgeon who is using minimally invasive....

best of luck...
jess

What is considered 'minimally invasive' when it comes to scoliosis surgery?

Thanks everyone for their input. I'm definitely going to seek out second opinions. I just wanted to see what everyone thought about what the first doctor says. I'm pretty sure I should deal with this now rather than later....especially since I have to start having children soon.

jeneemohler
08-24-2011, 12:50 PM
My thought is that Jess may be right- maybe considering a minimally invasive surgery-since you have one curve not involving the lumbar. You may be a perfect candidate. You are young and have a lot of years ahead of you, and a future that includes wanting children. If I was able, I would sure talk to one of the experts on this as one of my other opinions. It can't hurt.

And I apologize about my first post. I was NOT trying to talk you out of surgery. I am a poster child for successful surgery! Pooka1 slapped me around a little and set me straight. As I said, I was playing the devil's advocate, and raising hypothetical questions. Even if surgery is called for, it doesn't have to be done TOMORROW. You can put it off a few months and get a 2nd opinion. I just think it is good to gather as much information as you feel comfortable with, so that there is as little anxiety as possible about the surgery when you go into it. Then you are calm and confident about your decision and your doctor. So many people face fear and anxiety because they don't have enough information to feel at peace with it....

Pooka1
08-24-2011, 01:49 PM
Oh hey Jenee, that was not my intention! I just wanted to explain how we know there was progression but I also think you already understand this and just skimmed over the numbers too quickly.

And I thought your post had a large number of important points for anyone facing this to consider.

I think there is possibly a different mindset between cases that involve the lumbar and those that don't. I think there are very good reasons to wait as long as possible with double majors and lumbar curves. With thoracic and especially thoracolumbar, I personally view that situation as having much less time to think and react if there is any possibility of involvement or further involvement of the lumbar from waiting. Others may disagree.

Dr. Hey has posted at least three cases in the last year or so of spinal collapse or conversion of compensatory to structural curves in untreated, and some times subsurgical, scoliosis. But despite that, we still don't know how common it is. It may be quite uncommon. Only an experienced surgeon or three could advise a patient about that. I'm just saying were it me, I would have a very low threshold for surgery if a surgeon told me there was a reasonable chance of it happening to my kids when they would not be expected to need any more back surgery after the thoracic fusion.

By the way, I was in Cancun last week and was at Chichen Itza one of those days. I did NOT see you, not that I'm doubting you were there. :-)

It was interesting that we were not allowed to climb the ruins at Chichen Itza this time although we were able to climb when my husband and I were there about 20 years ago. After that, I was surprised to read in your post they still let folks climb at the other site you mentioned.

And there are far less fish, rays, etc. at Xel-Ha than there were 20 years ago but it is still beautiful.

jeneemohler
08-24-2011, 02:33 PM
Isn't scoliosis just one of the most aggravating, unpredictable things? That post was the first one of hers that I read, so I didn't have all the info. I did read her degrees, and just quickly estimated approximately 2 degrees per year. Most of what I've read consider that "normal". What in the heck is ever "normal" about scoliosis?!?!?! I think you are right about the differences between only a single curve as opposed to double curves. I was "lucky" enough to have double curves that were so well balanced. I think, and this is just my opinion, that a single curve must put a lot more pressure on the curve and be more prone to collapse. When mine collapsed, I just shrunk and scrunched up more. No one could tell unless they saw the xrays. When single curves collapse, you really can see the deformity. People didn't even know I had scoliosis unless I was in a swimsuit or summer clothes. Which could also be a curse because people don't think you have a problem. After throwing several pallets of freight, I would be in a lot of pain. Once in a great while, I would mention that my back was bothering me. I don't know how many times I've heard from coworkers "Oh, my back hurts sometimes, too." Hmmm.....not quite the same!

Anyway, I like the fact that there are a few people here on the forum who really research facts and can dig up information for those on here that don't know where to start or don't have the time to do so. As you know, I believe knowledge is power! And peace of mind. You and Ed, and some others I'm sure I'm forgetting, are great at it. That is your niche. Me, I just like to be as positive and supportive as I can. I try to make sure that I am aware of people's feelings and am respectful of the individual reality that they are living with. I believe that a lot of scoliosis patients are under a lot of stress and can sometimes be prone to some level of depression. It can be so frustrating!


As far as Chichen Itza, my guess is I'm pretty sure it has to do with preservation of the site. How many millions climbed that stairway every summer??? What was your take on the vendors lining EVERY path in Chichen Itza? I found it disrespectful of the site. So many people peddling their wares and bothering you every second of the day! I really liked Coba. It is still in the jungle, there are not a lot of people, and there is more of an ancient, mysterious atmosphere. It is only about a half hour inland from Tulum. I was also surprised that they let us climb at Coba. But that particular temple was the only one we were allowed on. I really wanted to climb it because I wonder if it will soon be off limits, too. I've never made it to Xel-Ha, but we did snorkel nearly every day while staying in Cozumel. We saw tons of fish and critters. Hurricane Wilma destroyed a lot of the reef 5 years ago. It is coming back, but it is a looong process. Like you said, still beautiful!

Pooka1
08-24-2011, 07:58 PM
Isn't scoliosis just one of the most aggravating, unpredictable things? That post was the first one of hers that I read, so I didn't have all the info. I did read her degrees, and just quickly estimated approximately 2 degrees per year. Most of what I've read consider that "normal". What in the heck is ever "normal" about scoliosis?!?!?!

Can you talk more about this? I have heard that 2* a year is expected for curves greater than about 50*. I am not so sure it is normal or expected for a 39* curve. Also, many people do not progress even 2* a year nor are they expected to do so. There are at least a few testimonials on here of folks with surgical range curves whose curves did not progress, sometimes for decades. Even my teenage daughter had documented 6-month periods of no progression though she ended up needing fusion. Curves less than about 30* are not expected to progress much if at all in an entire lifetime as I understand this which I may not. Linda will hopefully dope slap me if I have this wrong.

But I totally agree that "normal" is hard to apply to a condition like scoliosis which is so damn variable.


I believe that a lot of scoliosis patients are under a lot of stress and can sometimes be prone to some level of depression. It can be so frustrating!

I bet you are right. Life is unfair and depression is probably a very rational response to this predicament.


As far as Chichen Itza, my guess is I'm pretty sure it has to do with preservation of the site. How many millions climbed that stairway every summer??? What was your take on the vendors lining EVERY path in Chichen Itza? I found it disrespectful of the site. So many people peddling their wares and bothering you every second of the day! I really liked Coba. It is still in the jungle, there are not a lot of people, and there is more of an ancient, mysterious atmosphere. It is only about a half hour inland from Tulum. I was also surprised that they let us climb at Coba. But that particular temple was the only one we were allowed on. I really wanted to climb it because I wonder if it will soon be off limits, too. I've never made it to Xel-Ha, but we did snorkel nearly every day while staying in Cozumel. We saw tons of fish and critters. Hurricane Wilma destroyed a lot of the reef 5 years ago. It is coming back, but it is a looong process. Like you said, still beautiful!

Agreed! I also was shocked at the sheer number of venders all around the ruins. That was not like that 20 years ago.

As for snorkeling, my husband dove off Cozumel and said there was plenty to see as you say. We also snorkeled in the ocean just south of Cancun and there as many fish there as in Xel-Ha which is crazy. My recollection from 20 years ago was that it was like snorkeling in an aquarium stuffed with sea life.

Your pictures were great as is your recovery! :-)

judyat60
08-25-2011, 10:09 PM
Pooka1 makes an interesting point that reminded me of a comment Dr. Boachie said at my initial consult. He mentioned that if I had fused my thoracic curve say about 15 years ago, I might not have needed to go the full T4-sacrum now. Since I didn't want to go backwards with 'what-ifs' I didn't pursue the statement with him. Unfortunately I didn't know how bad my curves were until January of this year. My curves were so minimal at 12 and 30 years old, I was told both times not to worry, it's nothing. I'm now 60 with two 60+/-* curves. Who knows how fast and when.

jrnyc
08-25-2011, 10:30 PM
hi patty22
minimally invasive is an approach to scoli surgery that spares muscles somewhat
(not completely) and causes less blood loss....MI uses different kinds of incisions...more
like poking than cutting....
minimally invasive approach had been used for some years for thoracic area surgery, and
recently became available for lumbar surgery to the sacrum, surgery that goes all the waydown the spine...if you want to see an explanation of it, Dr Neel Anand, (who told me he considers MI approach the best approach for everyone by now)has a pretty good website describing the approach...the website has videos as well...
Dr Anand's opinion of MI is kind of extreme...most surgeons seem to feel MI is good for
some patients...it is only Dr Anand who told me he believes it is the only approach that
should be used now....i flew out to see him January 2010 for a consult....(he doesn't
take my insurance, so i paid cash)...
Dr Lonner offered me "partial" minimally invasive approach, which is what i will go for when/if i have surgery....

i think it is definitely worth it for you to at least look into the procedure.....

jess

Pooka1
08-25-2011, 10:52 PM
Pooka1 makes an interesting point that reminded me of a comment Dr. Boachie said at my initial consult. He mentioned that if I had fused my thoracic curve say about 15 years ago, I might not have needed to go the full T4-sacrum now. Since I didn't want to go backwards with 'what-ifs' I didn't pursue the statement with him. Unfortunately I didn't know how bad my curves were until January of this year. My curves were so minimal at 12 and 30 years old, I was told both times not to worry, it's nothing. I'm now 60 with two 60+/-* curves. Who knows how fast and when.

This is in keeping with the observation I have made from the testimonials from adults that what should be the majority type of fusion is not what is the majority type of fusion for adults though it is for kids. Single right thoracic curves are both the majority of cases that exist in kids and the most likely curve type to progress. That combination should result in the VAST majority of adult fusions being for single right thoracic curves. But that isn't what we see in the testimonials though they are not necessarily a representative sample of the entire population. Unless many of the adults being fused do not have AIS but rather adult onset scoliosis, then there is some conversion going on between single thoracic curves and double majors resulting in much longer fusions. Double majors tend to progress a lot also but they are a much smaller percentage of the total AIS cases. So that can't account for the observation if it is representative.

I have also noticed that the relatively few adults here with single thoracic curves that were fused had somewhat quicker/easier recoveries than the folks with longer fusions into the lumbar. Maybe that accounts for some of the differences between the average recovery for kids and that for adults which don't overlap much as far as I can tell though the general age difference still probably accounts for most of the average difference.

If enough data is gathered on conversion of untreated thoracic curves to double majors, lumbar collapses under even sub-surgical thoracic curves, etc., I think there might be new ethical questions about when to fuse thoracic curves, protective trigger angles, etc. etc..